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Newport mum backs national awareness campaign for rare disease

A mum from Newport, whose daughter has a rare liver disease, has welcomed a charity’s campaign to alert every GP practice in Wales to the signs of the condition in new born babies.

Alicia Bennett, 32, who also has a five year old son, Hendrix, admits that when Luna was born two years ago, she didn’t know that liver disease was something which affected babies, but her own health meant that Luna was monitored from a very early stage.

“I have Graves Disease, an overactive thyroid disorder” explains Alicia. ”And because of that, tests were run on Luna’s thyroid shortly after birth. She was slightly jaundiced so the hospital added in some liver function tests which revealed that her liver function and bilirubin levels were far from normal. This meant that the Royal Gwent Hospital was in touch with the specialist liver unit at Birmingham Children’s Hospital pretty much straight away, and they indicated which further tests needed to be done and what monitoring was needed. Luna and I were allowed home when she was 11 days old, with close monitoring from midwives and health visitors and I was also instructed to take daily pictures of her poo, which would be sent back to Birmingham.

“It was when Luna was seven weeks old, that my health visitor, Dale, expressed concern that, even though Luna appeared otherwise well, her poo was paler than usual. He arranged  for us to go straight to The Grange University Hospital, who of course were immediately in touch with Birmingham. After three days, we were transferred to Birmingham Children’s Hospital where it was confirmed that Luna had the rare liver disease, biliary atresia, and would need specialist surgery, known as a Kasai procedure, straight away. The Kasai, which aims to enable bile flow from the liver, can only be done until a child is eight weeks old. Luna was seven weeks old so time was of the essence and she underwent surgery just before her first Christmas.

“It was while I was in hospital with Luna that December that I discovered Children’s Liver Disease Foundation (CLDF). I wanted to learn more about biliary atresia and the nurse in charge on the liver unit told me that the best website with the most accurate information was CLDF.  When  I made contact through their website, their families officer responded and booked a video call with me and we just got on so well. As well as providing much needed emotional support, she signposted me to where I could get necessary financial help and put me in touch with other parents whose children have liver disease. It was great to know I wasn’t alone in this.

“The consultant told us that it would be six months before we knew if Luna’s Kasai had been a success but, during those six months, her health deteriorated. We were back at Birmingham every month – sometimes twice a month – for monitoring or consultant  appointments and by July, Luna was being assessed for a liver transplant. Doctors explained that, although she was a good candidate for transplant, she might be waiting for up to two years.  In the event, we were fortunate. A suitable liver was found within weeks and her transplant went ahead in September 2021 when she was ten and half months old. I will be forever grateful to her donor family.

“Luna has had a tough start in life. The last two years have been difficult, coping with everything she has gone through in the midst of a global pandemic, and we’re not at the end of the road yet. We still have six weekly appointments at Birmingham, and regular blood tests and weigh-ins. She has issues with eating, as we missed her weaning window when she had her transplant, and of course she will be on permanent medication.

“Despite all this, I consider myself blessed. Luna is such a resilient little girl and I’m so proud to be her mother. However difficult the past two years have been, things could have been even worse had we not received the diagnosis when we did. It’s why I’m so in favour of CLDF’s campaign to inform every GP surgery in the country of the signs of liver disease in babies. Jaundice is very common and most new parents will have no idea that  baby poo colour is so important – I’d hate to think that any case could be missed. Time is of the essence when treating these babies, and parents really need information and emotional support. Knowledge is power and life changing and Luna is living proof of that.”

Rebecca Cooper, Chief Executive of Children’s Liver Disease Foundation commented: “We’re delighted to hear that Luna is making good progress and has received such excellent care, including a very vigilant health visitor. Unfortunately because liver disease in children is rare, many GPs and health visitors will only see one or two cases in their career, and the crucial symptoms of pale poo and prolonged jaundice can be missed. Our Yellow Alert campaign informs health professionals and new parents of the signs they need to be aware of and the steps they should take. Early diagnosis is key when treating childhood liver disease and our aim is that all health professionals in Wales should have the tools to facilitate that.”

For details of CLDF’s Yellow Alert campaign or to order a free pack go to Yellow Alert – Childrens Liver Disease Foundation (

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